Dementia Dialogue

Young Onset Dementia: One family’s story on how a diagnosis impacted their lives- Season 4, Episode 42

Our Young Onset series begins with a conversation between Matt Dineen, a father of three and husband from Ottawa, Ontario and Jillian McConnell, guest host and Knowledge Mobilization lead with brainXchange.  Nine years ago, Matt's wife Lisa was diagnosed with Behavioural variant Fronto-temporal dementia (bvFTD) at the age of 43.  

Matt and Jillian discuss what his experience has been like including: how Lisa was diagnosed, the challenges surrounding a diagnosis and symptoms at such an early age,  how it impacted him, Lisa and their children (who were ages 12, 10 and 8 at the time) and what strategies and resources Matt found most helpful early on in Lisa's diagnosis and now, years later.
For more information:

• Association for Fronto-temporal degeneration:  https://www.theaftd.org/
• AFTD support groups in Canada: https://www.theaftd.org/get-involved/in-your- state/canada/
• The Dementia Society of Ottawa and Renfrew County: https://dementiahelp.ca/
• ASO: https://alzheimer.ca/on/en
• ASC: https://alzheimer.ca/en
• brainXchange: https://brainxchange.ca/public/home

Young Onset Dementia: One family’s story Pt. 2: the children’s perspectives

Jillian McConnell, our guest host, speaks with the Dineen children: Justin, Rebecca, and Peter who were just 12, 10, and 8 at the time of their mom’s diagnosis (9 years ago), about their experiences as younger children learning about their mother’s bvFTD diagnosis and now as teenagers / young adults. They discuss the unique challenges they faced and offer perspectives and strategies that continue to help them as they navigate their mother’s diagnosis and their relationship with her.

Part 1  is a conversation with Matt Dineen, their father.  

For more information: 

• Association for Frontotemporal degeneration: https://www.theaftd.org/
• AFTD support groups in Canada: https://www.theaftd.org/get-involved/in-your-state/canada/
• The Dementia Society of Ottawa and Renfrew County: https://dementiahelp.ca/
• ASO: https://alzheimer.ca/on/en
• brainXchange: https://brainxchange.ca/public/home

Balado 2- Vivre le moment présent et profiter de la vie

Marie-Reine et André sont tous deux natifs du Caire, en Égypte. Ils ont émigré au Canada en 1970 et habitent dans la région d’Ottawa. C’est là qu’ils ont fait leur carrière et élevé leur famille.

Il y a environ trois ans, André a été diagnostiqué avec la maladie à corps de Lewy, une forme de trouble neurocognitif qui partage de nombreuses similitudes avec la maladie de Parkinson.

Lors de notre rencontre, nous avons parlé du diagnostic d’André, de l’impact de ce trouble neurocognitif sur leur vie et des efforts qu’ils font, chaque jour, pour rester actifs physiquement et intellectuellement, et profiter du moment présent.

Episode 45- Communication through improv- Arts 7

A Toronto-based mental health clinician and artist specializing in aging, older age, and dementia, Aynsley Moorhouse elaborates on how the fundamental principles of theatre improv, such as saying “yes, and”, are also central to caregiving and communicating with people living with dementia. Improv teaches care partners about living in the now and supporting one’s partner by making them “look good”. She now works with care partners at the Reitman Centre using the principles of improv to connect with the people living with dementia they are supporting.

Resources:

Website: www.dementiacarers.ca

https://www.brainandlife.org/articles/how-improvisational-techniques-help-engage-dementia-patients/

https://www.psychologytoday.com/ca/blog/play-your-way-sane/202004/improvisations-benefits-people-dementia

Episode 46: Young-Onset Dementia: changing the narrative

Jill Czuczman a care partner to her husband David, living with Frontotemporal Dementia talks about some of the unique challenges associated with young-onset dementia from the long road to getting a diagnosis, to leaving the workforce early, the lack of understanding and stigma, to the struggles to find supports that meet the unique needs of those living with or caring for someone with dementia in mid-life. Facing these challenges head-on, Jill shares how she and David have made the choice to find the positive every day and the steps they have taken to live well with dementia, including getting involved in research and becoming advocates.

Resources

Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010

The Association for Frontotemporal Dementia - https://www.theaftd.org

brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia

Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia

brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia

S’adapter pour mieux vivre!

Notre invitée pour ce troisième épisode est Claire Giallonardo. Claire est native de Timmins, dans le nord de l’Ontario et habite maintenant dans la région de Peel. En 2014, alors qu’elle avait à peine 55 ans, Claire a reçu un diagnostic de Parkinson.

À la suite de ce diagnostic, Claire a dû repenser à son avenir et faire d’autres projets de vie; une période très difficile qu’elle qualifie de « traumatisante ». En contrepartie, cette période lui a aussi permis d’élargir son cercle social, de s’impliquer auprès de sa communauté et de renouer avec son amour des arts.

Claire et moi avons parlé de tout ça et bien plus encore dans le balado qui suit !

 

Cliquez sur ce lien pour lire le poème de Claire qui s’intitule « Faux cils, quelques-unes des toiles de Claire, et la biographie et photo de Claire  https://www.dementiadialogue.ca/podcast-3-biographies

 

 

Episode 4: Les villages culturels

Nos invités pour cet épisode sont Véronique Legault et Pierre Roisné, respectivement Directrice générale du Regroupement des ainés de la Nouvelle-Écosse et Directeur général du Réseau santé Nouvelle-Écosse.

Véronique et Pierre collaborent depuis quelques années sur Villages culturels, un projet dont le but principal est d’identifier des méthodes, des approches et des activités culturelles qui pourraient être utilisées dans les centres de soins de longue durée en Nouvelle-Écosse afin de créer une atmosphère culturelle acadienne et francophone pour les résidents.

Ensemble nous avons parlé de la réalité de la communauté francophone et acadienne en Nouvelle-Écosse, des grands objectifs de leur projet et de leurs espoirs aussi pour les villages culturels.

Nous avons aussi demandé à Véronique de nous parler un peu de deux initiatives très intéressantes du Regroupement des ainés : lettres entre générations et cœur d’artiste!

Si vous aimez la musique, nous vous invitons à découvrir la chaine YouTube du Regroupement des ainés de la Nouvelle-Écosse.

Nous vous invitons également à visiter les sites Web du Regroupement des ainés de la Nouvelle-Écosse et du Réseau santé Nouvelle-Écosse pour plus d’information sur leurs services et ressources.

 

Season 4, Episode 48: Young Onset Episode 4 - ”Have a Good Day, Every Day”

John and Cindy McCaffrey's motto is  “Have a good day, every day”. In this episode of our Young Onset Dementia series, guest host, Kathy Hickman of the brainXchange and Alzheimer Society of Ontario talks with them about their experiences of living with and caring for someone with young-onset dementia, how they have built a sense of community and continue to maintain a positive attitude by living in the moment.

John and Cindy discuss how they took action when they couldn’t find the “right” supports for someone living with young-onset dementia by creating a program called YouQuest. YouQuest focuses on providing intentional days for people living with young onset dementia based on providing real-life experiences, all guided by its participants.

Resources

YouQuest - https://youquest.ca/

Online Support Group for care partners of people with young-onset Dementia – Contact cindy@youquest.ca

Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010

The Association for Frontotemporal Dementia - https://www.theaftd.org

brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia

Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia

brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia

 

 

Summer Reprise #1 - Human Rights and Dementia

Our summer reprises focus on the theme of advocacy at the system, community service and individual level.  This first episode released in May 2020  outlines the connection between human rights and dementia, with particular attention to the impact of COVID-19 on long-term care. Mario is a dementia activist who is a co-creator of a Canadian Charter of Rights for Canadians with Dementia for the Alzheimer Society of Canada. Laura Tamblyn-Watts of CanAge is a lawyer and leading advocate for older people and Margaret Gillis leads the International Longevity Centre, Ottawa and is working to have Canada adopt the UN Convention on the Rights of Older Persons. Each gives their own advice on what listeners can do to promote human rights for people with dementia.

Summer Reprise #2 Marshalling Resources

Our summer reprises focus on the theme of advocacy at the system, community service and individual level.  In this episode originally released in May 2018, Louise Milligan describes how her husband Gord was diagnosed with dementia while still teaching and raising two daughters. Louise speaks eloquently about the challenges their family faced and how she was able to use community resources to help.